Developing Partnerships to Advance Precision Medicine with AI/AN Tribal Nations

摘要 美国印第安人和阿拉斯加原住民（AIAN）不太可能参加纵向 研究，临床试验和基因检测中，由于人口少， 总体人口规模和对科学、研究和联邦政府的普遍不信任。 为了实现其包容性目标，“我们所有人”计划（AOU）必须继续与 部落民族。我们建议的项目是专门开发的，以建立信任，通过战略 它尊重社区成员和部落领袖所确定的荣誉。 NIH/AOU在部落协商过程后作出的承诺之一是“首先 通过与部落民族和城市社区的小型试点项目， 和农村部落社区，并将利用收集的信息来评估成功， 在扩大与部落的任何合作之前，失败。 为了帮助AOU实现这一承诺，社区准备评估（CRA）将确定 对试点项目感兴趣并需要在能力建设方面得到更多支持的国家， 帐号吧.将制定社区准备情况调查表并进行试点测试。我们将与 部落/社区顾问制定和实施调查，并提供工具和指导， 支持准备程度较低的部落/社区的能力建设工作。我们的目标 收件人： ·建立部落和城市AIAN社区领导人咨询理事会， 开展社区准备情况评估（CRA）调查; ·提供反馈，以支持部落合作伙伴和AOU研究计划，以优先考虑 建立伙伴关系的适当战略; 记录建立这种伙伴关系的最佳做法; ·与AOU部落参与办公室合作，制定战略计划， 长期参与该计划的部落;以及 ·将产品/材料提交给NIH部落咨询理事会批准。

ABSTRACT American Indians and Alaska Natives (AIAN) are less likely to participate in longitudinal studies, in clinical trials, and in genetic testing and are a hard-to-reach population due to small overall population size and a general mistrust of science, research, and the Federal government. To meet their inclusion goals, the All of Us program (AOU) must continue to build trust with Tribal Nations. Our proposed project is developed specifically to build trust through strategies that honor key values identified by community members and Tribal leaders. One of the commitments NIH/AOU made following the Tribal consultation process is to “first engage with tribal communities through smaller pilot projects with Tribal Nations and urban and rural tribal communities and will use the information gathered to evaluate the successes and failures before scaling up any collaborations with tribes.” To help AOU meet this promise the community readiness assessment (CRA) will identify nations that are interested in pilot projects and which need greater support in capacity building to do so. A community readiness survey will be developed and pilot tested. We will work with Tribal/Community Advisors to develop and implement the survey(s), and tools and guidance in supporting capacity building efforts for Tribes/communities at lower levels of readiness. We aim to: • Establish an Advisory Council of Tribal and urban AIAN community leaders to develop and implement a Community Readiness Assessment (CRA) survey; • Provide feedback to support Tribal partners and the AOU research program to prioritize appropriate strategies for building partnerships; • Document best practices in building such partnerships; • In collaboration with the AOU Tribal Engagement Office, develop a strategic plan for long-term Tribal engagement for the program; and • Present the products/materials to the NIH Tribal Advisory Council for endorsement.